Ethical Considerations in Biobanks: How a Public Health Ethics Perspective Sheds New Light on Old Controversies

Abstract

Biobanks, collections of biospecimens with or without linked medical data, have increased dramatically in number in the last two decades. Their potential power to identify the underlying mechanisms of both rare and common disease has catalyzed their proliferation in the academic, medical, and private sectors. Despite demonstrated public support of biobanks, some within the academic, governmental, and public realms have also expressed cautions associated with the ethical, legal, and social (ELSI) implications of biobanks. These issues include concerns related to the privacy and confidentiality of data; return of results and incidental findings to participants; data sharing and secondary use of samples; informed consent mechanisms; ownership of specimens; and benefit sharing (i.e., the distribution of financial or other assets that result from the research). Such apprehensions become amplified as more researchers seek to pursue national and cross-border collaborations between biobanks. This paper provides an overview of two of the most contentious topics in biobank literature -informed consent and return of individual research results or incidental findings - and explores how a public health ethics lens may help to shed new light on how these issues may be best approached and managed. Doing so also demonstrates the important role that genetic counselors can play in the ongoing discussion of ethically appropriate biobank recruitment and management strategies, as well as identifies important areas of ongoing empirical research on these unresolved topics.

Kosseim, P. (2011). Banking for the Future: “Informing” Consent in the Context of Biobanks. Paper submitted at the IV International Seminar on the UNESCO Universal Declaration on Bioethics and Human Rights, organized by the UNESCO Chair of Bioethics in the University of Barcelona and the Catalan Data Protection Authority from http://www.priv.gc.ca/media/sp-d/2011/sp-d_20110121_pk_e.asp. Accessed 19 Nov 2013.